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Strange, Tingling Sensations!

I have been having the most awful sensations recently and I know that they sound weird, but please bear with me!

I have always suffered from Orthostatic Hypotension (low blood pressure), where I faint if I stand up too quickly, but this is very different!

I get these strange sensations where I feel as if I am floating and lying down doesn't seem to help very much! My vision tends to go blurry, I get a headache and I feel very sick and dehydrated. Sometimes, I also feel as if I am not really in my body, as if I wasn't there and it's a really scary feeling!

At other times, I experience a debilitating bout of EXTREME nausea, where my vision also goes funny and I get a headache. I feel as though I desperately need to lie down, but when I do, I don't feel any better! It is the most FRUSTRATING thing that I have ever experienced and often lasts for an hour or more! :cry: Other people tell me that I look very strange while I am experiencing these sensations and that I go deathly pale.

After these episodes, I often experience these strange, tingling sensations in my hands, which are VERY painful, but only last for a few minutes. Today, I had a similar experience, but it was my left thigh that began to tingle and sting!

I have Epilepsy and at first, I thought that these might be auras (warnings), but I have never had a seizure after these episodes, so I doubt that they are connected. They are also not typical of the auras that I get before a migraine comes on and although these sensations cause me to have an extreme headache, they definitely do not cause migraines.

I am also having terrible problems with my electrolytes, which are continuously very low, even when I am not vomitting or don't have Diarrhea or Dysentery and I drink a lot of water. It is becoming a terrible problem, especially the Hypokalaemia (low Potassium level), but I saw my Urologist today and he confirmed that my kidneys are not causing the problem. This is worrying me because I feel that this electrolyte imbalance may be at least partially responsible for these strange sensations and electrolyte imbalances are not good for people with Epilepsy because they often induce seizures. I was paralysed for three days a few weeks ago and we feel that the Hypokalaemia was most likely responsible.

I am going to see my Neurologist on Wednesday after School (I am sixteen) and am going to speak to him about these strange sensations because I feel that this is a Neurological problem.

I was just wondering if anyone else has gone through/is going through a similar problem or whether anyone has any advice for me?

Have you doctors discussed whether your lupus may be affecting your central nervous system? In the early stages of my CNS involvement, I often had strange spells of vertigo, or feeling really disoriented, and having strange visual things like lightning flashes, but they didn't cause a headache or seizure. The doctors finally detwermined that it was lupus-related, and that I was having small spasms of the arteries that supply blood flow to the brain, like a Reynauds phenomenon of the brain. So if these episodes continue, you might ask your neurologist about the possibility of CNS lupus. I would also wonder if maybe you're drinking too much water, and diluting the electrolytes in your blood. Water is like anything else, you can have too much of a good thing, and if you're overhydrated, you can literally flush the electrolytes right out of your system. Sweating a lot can also deplete your body of electrolytes. So maybe keep track of how much water you are drinking every day, and substitute veggie juice or a sports drink occasionally, and see if that helps any.

First of all, I told him that the Epilim (Depakene in the U.S.A; Convulex in the U.K.) is working very, very well. He said "That's very interesting because they often use Epilim to treat Bipolar Disorder and it's probably a good thing that you are on it then, considering the fact that your mother suffers from depression." EXCUSE ME? Is he trying to insinuate that I have Bipolar Disorder?! I DO NOT HAVE BIPOLAR DISORDER! He seems insistent on trying to find something psychologically wrong with me! He is NOT a Psychiatrist, nor a Psychologist for that matter, and my Psychiatrist has assured him that there is NOTHING wrong with me! My mother is a Psychologist and she would DEFINITELY notice if there was something wrong with me! I don't even suffer from mild depression, never mind Bipolar Disorder! I am practically NEVER depressed! I don't even get stressed that often!

Then, I told him about the strange sensations that I experience. He totally shrugged the tingling, etc. off and when I told him that sometimes it lasts for an hour in my hands, he gave me such a disbelieving look and said "Come on. Think about it!". I would NEVER lie or exaggerate about something like that! My other doctors don't have a problem hearing about this, so why does he?

Then, we discussed the fact that I'm tactile (It was really bad when I was younger; I wouldn't wear shoes, socks, jerseys, scarfs, cardigans, shorts, pants, etc.! I am still unable to wear pants and cannot wear anything tight). He then said: "Yes, well that's psychosomatic, you know." My mother and I have always thought that tactility was NEUROLOGICAL; skin sensations occur from your Parietal Lobe and I always thought that this meant that something had gone wrong in that lobe of my brain. I'm sorry, but you CANNOT "pop" out of your mother's stomach with a Psychosomatic Disorder, END OF STORY!

Then, my mother and I were telling him about the Gynaecologist and I told him about my back problems and asked whether he thought that Physiotherapy would be a good idea for me again (I stopped it two years ago and my Neurologist wants me to do Occupational Therapy again for my Fine Motor Co-Ordination Problems and my Tactility.). He then said: "You can't have everything wrong with you, you know!" :cry: OH MY WORD! When you go to a doctor, you go to complain about something that is wrong and to ask for help! I NEVER said that I had everything; there are people five million times worse off than me and I am fully aware of that and thank God everyday for what he does for me! :cry:

Then, my Neurologist keeps telling me that I'm "too suggestive" and he was convinced the last time that I saw him that I read things and then my mind creates them and so I need to see a Psychiatrist and do Cognitive Behavioural Therapy! :cry: :cry: I am NOT suggestive and there is NOTHING psychologically wrong with me! Why can't he just accept that? I can't take this anymore! :cry: :cry: :cry: :cry:

I'm sorry you are having to experience this kind of attitude at such a young age. I know it's not much consolation to you at this point, but many women (and men) with lupus find their symptoms treated as hysterical, hypochondriac, or psychosomatic. Lupus can cause such a wide range of different and seemingly unrelated symptoms that many doctors think first about a psychological explanation instead of a physical one. And unfortunately, many doctors let their prejudices and preconceptions affect the way they treat their patients, and this is especially true when the patient is a teenage female. But you are a very bright girl, and you can deal with this problem by being assertive and firm with your doctor. It might help if your mom is not in the exam room or consulting room with you - this forces your doctors to deal with you on a more adult level. When the doctor makes comments, you can politely but firmly say something like "Excuse me, but I've seen a psychiatrist. He thinks these symptoms are physical, not psychological. If you disagree with him, tell me why. Otherwise, please try to help with these problems instead of treating me like a hysterical teenager. If you don't think you can help me, refer me to someone who can." Be calm, but forceful. Usually, when you call a doctor on his attitude, it improves. But please don't take this kind of behavior personally - it has happened to many lupus patients, and you just have to respond to it when it happens.

Thanks again for your wonderful advice; it has really helped to calm me down.

I always go to see my doctors by myself, but my mother would come in with me when I went to see my Neurologist because of the important decisions involved in Epilepsy medication, etc. However, my mother can't stand my Neurologist and has now refused to ever come in with me again. I used to like him very much and in a way, I still do, but he just says some very stupid, unfair and annoying things. He is a brilliant Neurologist, but he knows it too and is a bit too arrogant for my mother's liking. The arrogance, I can handle, the attitude, I can't!

You're right, Marycain! Next time, if he brings up the psychological issue again, I will speak to him very firmly about it.

I just found out that Tactile Defensiveness is ONE HUNDRED PERCENT NEUROLOGICAL and is often treated by a Neuropsychiatrist because a lot of people think that the problem is psychological, when actually, there's usually NO psychological involvement WHATSOEVER. Infact, Tactile Defensiveness often co-exists with other Neurological problems, e.g. A.D.D./A.D.H.D.; Fine Motor Co-Ordination Problems (which I have); Gross Motor Co-Ordination Problems; Austism; Asperger's Syndrome, etc. Tactile Defensiveness involves problems with the patient's nerves and their nerves send messages of extreme pain or discomfort to their brain, when certain substances touch the person's skin. SO THERE, Dr!

One other thing you might want to take into account - some epilepsy medications (including Epilim) can themselves cause paresthesias (strange tingling sensations) and heightened sensitivity to touch and pressure. So it's possible that the side effects of your medications might be aggravating your-preexisting sensitivity to touch. Have you noticed any changes in your skin sensitivity since you changed your meds?

I did Occupational Therapy for five years when I was younger (Pre-Grade One to Grade Four) and it really did help with the Fine Motor Co-Ordination Problems and the Tactile Defensiveness (They used to cover me with Baby Powder and wrap me in a hammock! ). My Neurologist wants me to do Occupational Therapy again and I am perfectly willing because I know that it definitely does help.

No, I haven't really noticed any change since I changed my meds, to be perfectly honest. I'm just really worried about the strange sensations that I experience because they're SO painful! :cry: I have a very high pain tolerance (When I was eleven, I had a very bad accident where I tripped, flew through the air and landed on my chin, with the rest of my body coming crashing down. I knocked my front two adult teeth clean out of my mouth and broke another nine teeth. I also broke my nose, dislocated my left elbow, cut and grazed every spare inch of my body and swallowed so much blood from my mouth that I ended up bringing it all up again! I then did my Ballet Examination an hour later, having only seen the School Nurse!), so I would never complain or even mention a word unless the pain was REALLY bad! :cry: I just don't understand why he doesn't believe/want to believe what I'm saying and why he just shrugs it off? :? :cry: None of my other doctors had a problem with it! I love my Paediatrician/Paediatric Cardiologist because he always believes me and never doubts anything that I say. He told my Psychiatrist that he likes me a lot and that he believes what I tell him, which is one of the reasons why we have a special arrangement with him (technically, I am too old for a Paediatrician), as well as the fact that I have very minor heart and blood pressure problems. He is just SO thorough: He always listens to my chest; does my peak flow; looks at my throat, my nose, my eyes and my ears; checks the fluid balance of my ears; looks for any swollen lymph nodes; checks my reflexes; takes a look at the flexibility and inflammation of my joints; examines my spine; feels my abdomen; checks my weight; takes my temperature; checks my urine; takes my blood pressure twice; and lastly, he ALWAYS listens to my heart and takes my pulse rate. If he's worried or concerned at all, he does an E.C.G. Most importantly though: He LISTENS! He actually listens and makes notes of everything, checks my medication with me and asks about any problems there. He is prepared to listen to me if I have any concerns or problems with any of my other doctors, he will always admit if he is unsure or does not know about anything and is prepared to refer me to brilliant specialists, if necessary. It was on his insistence that I saw the Gynaecologist. Otherwise, we would never know about the problems that I have there! He always asks how school is going and encourages me to become a Neurosurgeon; he is supportive when I tell him about any emotional bullying; he teases me, laughs with me and cheers me up (actually, he told my Psychiatrist that I make him laugh?! :? :lol; he does not prescribe meds unless it's really necessary and always ASKS if it's alright for him to take some blood (he's good with that too and checks things which are important, but which most doctors don't seem to think about). I am unable to take Beta Blockers because of my Asthma, so he taught me some strategies which I can use to try and stop bad heart palpitations. He spoke to my mother about how to take my pulse correctly and about what to do if my heart palpitations get much worse quickly, will not stop or if my heartbeat becomes irregular and will not correct itself after a few hours. My mother discussed this with my teachers and my closest friends also know what to do. He encouraged me to keep a health diary where I can record any worries, concerns, symptoms, doctor's appointments, scans, etc. and told me to bring it along whenever I see a doctor. He makes me record my bowel movements (sorry! ops and how many times I urinate every day. He also makes me record whenever I have a heart palpitation, what I was doing before the palpitation, what I had eaten, approximately what my pulse rate was, what it felt like, how long it lasted, how I felt afterwards and whether I felt that my blood pressure was too low. He spoke to my mother about what she/my friends/my teachers must do when I faint; when it's necessary to call him with regard to any vasovagal problems and he gave me his card to give to the school receptionist, incase they need to contact him for any reason.

It's so nice to have a doctor like that!

I'm sorry this message is so long; you must be bored stiff and have probably fallen asleep by now! :sleeping:

Last night, I was lying in my bed, trying to fall asleep, when suddenly, my lower calf began to "pop"! :?: It was scary, odd and quite painful! It stopped and started twice and I put my hand on my lower calf and could actually feel the "popping"! It was awful! When it had stopped, I got up to go to the bathroom and while I was there, the "popping" began again and this time I could actually SEE something bulging in and out of my lower calf! It was absolutely terrifying!

I have had this before, but never this bad and never lasting this long! It went on for about fifteen minutes! :!: I had it in my back for approximately three minutes a week or so ago and I have also had it in my left thigh, where my thigh just started tingling and moving very quickly, up and down.

Today, I was at School, holding my Physical Sciences file, when suddenly, my hands began to shake uncontrollably. I couldn't seem to stop them and it wasn't caused by cold (we are having a heat wave here!) or worry because I was definitely NOT nervous (I am practically NEVER nervous) and there was nothing to be nervous or worried about?

I don't know what to do because my Neurologist probably won't listen to me?! :cry: :x However, I think that my nerves are going crazy!

I suppose that I will just have to speak to my Paediatrician/Paediatric Cardiologist about it when I see him again.